Genomic Data Infrastructure Ireland project supports discovery of genetic causes of disease

RCSI University of Medicine and Health Sciences and FutureNeuro is co-leading, with University College Dublin, the Irish element of a new EU project to support the integration of genomics into healthcare and advance new treatments for patients.

Jointly funded by the European Commission, under the Opens in new window digital Europe Programme, and the Health Research Board (HRB), Genomic Data Infrastructure (GDI) Ireland is part of a consortium of 20 EU Member States with the goal of enabling access to genomics and corresponding clinical data across Europe by creating secure data infrastructure. The project will facilitate a cross-border federated network of national genome collections for biomedical research and personalized medicine solutions.

GDI Ireland National Co-Lead, Professor Gianpiero Cavalleri, Professor of Human Genetics at RCSI and Deputy Director of the Opens in new windowSFI FutureNeuro Research Centre, said: “By realizing this federated analysis system we will enable Irish genomes to be safely and securely analysed alongside similar datasets from other European countries. Such infrastructure can accelerate the discovery of genetic causes of disease and inform the development of much-needed treatments for conditions such as cancer that can have a devastating impact on our lives.”

The Irish GDI hub will establish best practices to manage the Irish genetic data, protecting the security of the personal data contributed by individuals. Work will be informed by the experience and technology developed by European partners.

The GDI project positions Ireland to participate in the ambitious Europe-wide ‘1+ Million Genomes’ initiative, which is driving the development, deployment, and operation of sustainable data-access infrastructures within each participating country.

Commenting on the announcement, Dr. Mairead O’Driscoll, Chief Executive of the Health Research Board, said: “The GDI project brings together national agencies, research organizations, technology providers, and patient organizations in 20 countries. The overarching goal is to design, develop and operationalize a cross-border federated network of national genome collections and other relevant data to advance data-driven personalized medicine for the benefit of European citizens.

“Ireland’s participation in this project will see our researchers, clinicians, patient representatives, experts in data governance, data analysts, and others collaborating on a roadmap for data infrastructure in Ireland and conducting proof-of-concept work using synthetic data.” 

Professor Gianpiero Cavalleri (School of Pharmacy and Biomolecular Sciences, RCSI), and Professor Denis Shields, (University College Dublin), are Co-Directors of the GDI Ireland project with Professor Aedin Culhane (University Limerick) and Professor Markus Helfert (Maynooth University and SFI Empower SPOKE Director) as co-applicants.

The team will be supported by the SFI Centre for Research Training in Genomics Data Science, the Irish Platform for Patient Organisations and Industry (IPPOSI), and Health Research Charities Ireland (HRCI).

Serena Scollen, the European GDI Coordinator also emphasized the importance of having an infrastructure for genomic data. She commented: “Countries will be able to deploy infrastructure to facilitate secure cross-border data access. Ultimately the benefit will be for the citizens of Europe and through shared learnings and improved healthcare, citizens globally.”